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1 Who this palliative care guide is for

This guide is for you if you have a seriously ill or terminally ill elderly parent or elderly family member who is unlikely to recover or stabilize.

This practical guide to palliative care will help you and your parent understand what palliative care is, what your options are and how to access palliative care – both from within the Ontario Canada healthcare system and privately.

This guide will also provide you with an overview of the legal documentation your parent needs to put in place.

You’ll learn what happens physically when someone dies, who does what and who to contact.

And lastly, you’ll find links to additional resources for more in-depth, specialized information on palliative care.

2 What is Palliative care?

“Palliative care is a type of health care for patients and families facing life-limiting illness. Palliative care helps patients to achieve the best possible quality of life right up until the end of life.

Palliative care is also called end-of-life, or comfort care.”

Palliative care takes a holistic or overall approach to providing care and attempts to address the physical, psychological, emotional and spiritual needs of those who are receiving it.

Palliative care provides a respectful client focused approach that includes family, and is respectful of cultural needs.

“Palliative care intends neither to hasten nor postpone death.”

The palliative care team can include Doctors, Social Workers, Registered Nurses, caregivers – family, friends and paid professionals, spiritual leaders and volunteers.

3 Understanding your parent’s wishes

Why it’s important Dealing with issues surrounding death can be very stressful for everyone.

Understanding your parent’s wishes will help inform all of the decisions you, your parent and your family will need to make from this point on – so it’s important that these issue be dealt with and not put off.

Understanding your parent’s wishes will:

help minimize conflict and reduce everyone’s stress level.

help make clear what action should be taken at key times.

4 3 key things you need to know as soon as possible

Below are three of the most important decisions your parent will need to make.

Your parent will also need to communicate their decisions clearly to you and the rest of the family (assuming that everyone is going to be involved).

If your parent does not make these decisions while they are competent and able to, then your parent’s Power of Attorney for Personal Care will need to make these decisions for them.

While at first the questions may seem fairly easy to answer, it’s important that everyone understand what their decisions actually mean (more on this below).

The 3 key questions are:

If they are not conscious, would your parent want to continue to receive nutrition and hydration (via feeding tubes etc.)?

If they are found without vital signs, would your parent want resuscitation to be attempted?

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5 Understanding what your parent’s decisions actually mean

Because your parent’s wishes will most likely affect you and other members of the family – do you all understand and are you prepared for the outcomes that will result from following your parent’s wishes?

For example:

If your parent would not like to receive nutrition and hydration if they are unconscious – does everyone understand that this will likely result in death within 2 – 3 days?

If your parent would like to continue to receive nutrition and hydration (through intravenous and feeding tube), does everyone understand that your parent may live for weeks or even months and possibly not regain consciousness?

If your parent would not like resuscitation to be attempted if they are found without vital signs does everyone understand that this may reduce the opportunity for friends and family to be present at the time of death?

If your parent would like resuscitation to be attempted if found without vital signs, does everyone understand the that the process is very physically intensive and can result in broken bones severe bruising etc., and that if successfully resuscitated it is possible that they will not be as well as they were previously?

If your parent would like resuscitation to be attempted do they understand that this may limit some of the options available to them, that many hospice settings make a DNR (Do Not Resuscitate) directive mandatory in order to be admitted.

If your parent would prefer to die at home, is your other parent and/or anyone else living at home comfortable with this decision?

Do they understand that there will be an increased level of traffic in the home from Caregivers, visiting Doctors and device providers etc.?

Are your parents prepared to accept a lower level of privacy due to the increased traffic?

How will the surviving spouse feel about continuing to live in the home where their life partner has passed away?

If your parent has stated a preference to receive care in an institutional setting instead of at home will their spouse, family and friends be physically able to visit as often as they would like (this can be a significant issue in the winter months or for people who are reliant on others for transportation)?

Will family and friends be comfortable during extended visits (a visiting elderly spouse may not be able to sit for hours by the bedside in an institutional setting)?

Does everyone understand that they will likely have less control over the care that is provided in an institutional setting?

Understanding what your parent’s decisions mean may make it easier for you to be understanding and supportive.

6 Where your parent can receive palliative care

Palliative care can be provided in your parent’s own home, in a hospice, in the hospital or in a long term care facility (long term care facilities generally only provide palliative care for their own residents).

Home

Hospice

Hospital

Long-term care (LTC) facility

The options that are available to your parent depend on a number of things; from the diagnosis and medical support needed, to the decisions that your parent has made about things like being resuscitated (more on this below).

PALLIATIVE CARE AT HOME

By home we mean your parent’s “family” home or a Retirement home – the place your parent currently calls home.

Advantages of palliative care at home

Having palliative care at home can help minimize trips to the emergency department and the need for hospitalization, and allow your parent to remain in the comfort of their own home For many seniors receiving palliative care, the familiar surroundings of home means they are more relaxed and less stressed and are more able to participate in daily activities.

For family it means little or no travel time is involved to spend time together. Visits can be more frequent, more “normal”, less clinical and more pleasant.

At home, your parent’s schedule is their own. They can sleep when they want to, be awake when they want and eat what and when they want to. They can enjoy the view out a favourite window or enjoy the company of family, friends, neighbours or even their pets, at any time.

Things to be aware of when your parent chooses to receive palliative care at home:

Your parent’s LHIN/CCAC Case Manager may not be a medical professional such as a Registered Nurse and may instead be a Social Worker or Occupational Therapist. If you feel that there is a need for a medical point of view regarding a care issue, ask for a Registered Nurse from the LHIN/CCAC to assess the situation.

Some people may feel that there is a stigma attached to dying at home “this is the room dad died in” for example. Your parent may also feel that the family does not want them to die at home. It’s important to discuss these issues before your parent makes their decision on where to receive palliative care, to avoid misunderstandings.

Yes, pain can be well very well managed at home. Your parent can be comfortable at home.

You may find that even the enhanced level of care provided through the LHIN/CCAC palliative care program is not sufficient to keep your parent safe and well cared for.

Many families find that it is beneficial to hire private care through a home health care company with palliative care expertise to supplement the care that the LHIN/CCAC is providing.

Yes, your parent can change their mind and be admitted to a facility setting to receive palliative care at any time in this process.

Palliative care through the LHIN/CCAC is an enhanced level of care that is available for a defined period of time (your parent’s LHIN/CCAC supervisor or Case Coordinator will let you know the specific number of weeks and a maximum number of hours of care available to your parent).

Note: The Community Care Access Centre (CCAC) were merged into the Central Local Health Integration Network (LHIN) as of June, 2017, as part of the Patients First program of the Province of Ontario.

The maximum number of hours of homemaking or personal support services available through the LHIN/CCAC, with respect to any one person, is 120 hours in the first 30 days (approximately 30 hours per week) of service, and 90 hours in any subsequent 30-day period (approximately 22.5 hours per week).

For a person who is in the last stages of life, more than the maximum number of hours of homemaking or personal support services may be provided – for no more than 90 days in any 12 month period (note that “more” is not defined).*

At the time of this writing up to 56 hours of care per week may be provided under this enhanced care program.** However, this is not a firm policy and the number of weeks and hours of care are constantly being revised.

For your reference, there are 168 hours in a week, and 4 weeks has 672 hours.

Care does literally stop at a specified point. If program hours have been exhausted and an individual still requires palliative care service, they may not necessarily receive any additional assistance beyond the program limit. A LHIN/CCAC Case Manager makes the call on eligibility.

As you can imagine, restrictions on care delivery can make for very stressful and difficult decisions at a time when everyone is already highly stressed.

Care through the LHIN/CCAC is not a means-tested service – it is available based on care needs regardless of income.

The Reality of care at home:

Staying in your own bed is an idealized “movie” version of palliative care at home. In reality, you may need to bring a hospital bed into the home to make providing care safer – for caregivers as well as your parent. Having a speciality mattress and a hospital bed also reduces the chances of your parent getting bed sores and the ability to reposition easily can help with comfortable breathing and safe feeding.

LHIN/CCAC may make equipment, such as a hospital bed, suction machine, specialty and mattress available on “loan” for a period of time, often 30 days. After this period you may need to rent the equipment from the supplier. Other supplies such as briefs, as well as swabs for oral care may also be provided. Again, this is at the discretion of the co-ordinator.

PALLIATIVE CARE IN A HOSPICE

A hospice is a home-like setting that is specialized in providing palliative care. Additional third party private care is not usually needed, and is sometimes not allowed.

Care is delivered by an interprofessional team of healthcare professionals who have an interest and expertise in delivering palliative care and who work to support your parent and your family.*

Care is provided in a structured setting with rules, standards of care, and procedures.

In addition to the above hospices, many hospitals in the Toronto and GTA area have dedicated palliative care beds – see below for more information.

PALLIATIVE CARE IN A HOSPITAL

Many hospitals in the Toronto area have palliative care units. Many of the staff who work in these settings have specialized expertise in caring for patients who are palliative.

Advantages of receiving palliative care in a hospital:

Many families find that they would like their parent to have one on one care, especially during times when they are not able to be present themselves. Most hospitals do allow supplementary third-party care providers so that someone can be with your parent as they require or as you wish. This can provide peace of mind to families and be a source of great comfort for the person receiving palliative care.

Visiting hours are often very flexible and arrangements can be made for friends or family to stay overnight.

Pets may be allowed to visit – although visits usually need to be pre-arranged.

Things to be aware of when your parent chooses to receive palliative care in a hospital palliative care setting:

There are restrictions on how early on you can access palliative care in a hospital. Hospital stays are covered by OHIP for the first 90 days (basic ward level), after which the hospital will likely charge you a rate in line with the Ministry of Health and Long-Term Care’s mandated copayment fee*. The daily maximum hospital co-payment fee for 2017 is $58.82.

A Do Not Resuscitate (DNR) order is often a requirement for admission.**

Private rooms are often available, for a charge.

Travelling to the hospital and parking lot fees can present an obstacle for some family and friends, potentially reducing visits and increasing a feeling of isolation.

If there’s a partner, they can take a break and return home to get some rest.

PALLIATIVE CARE IN LONG TERM CARE FACILITIES (LTC/NURSING HOMES):

Long Term Care facilities typically offer palliative care support to existing residents. It is generally recognized that long Term Care Facilities are not usually resourced or focused on providing palliative care and therefore do not have the expertise to provide quality palliative care on their own. If your parent is a resident at a Long Term Care facility you may want to hire a private home health care service to supplement the care available in the facility and to advocate for your parent.

7 Helping your parent decide which palliative care setting is best for them

What are your parent’s wishes? Would they prefer to be at home, in a hospital or hospice etc.?

Your parent’s medical team should be able to provide guidance on what they can expect and the care requirements they should plan for. This will help you and your parent better understand what care arrangements will need to be put in place and what settings are options.

Care needs can be very specific to the medical condition and progress of the illness that your parent is dealing with, and not all settings may be realistic options in all situations.

Also, keep in mind that care needs change over time and the care arrangements should respond to these changes.

Talk with a private home health care service with experience providing palliative care.

Ideally, they should be assigning a Registered Nurse to case manage your parent’s care and to supervise and support the Personal Support Workers (PSW) at the bedside.

The private service will be able to help you understand what level of support they can offer over and above what is offered through your Community Care Access Centre.

You may be surprised at just what is possible at home – the key is having a Registered Nurse case managing the care.

8 The Central Local Health Integration Network Palliative Care Team – when and how to access palliative care through your LHIN/CCHC

Note: The Community Care Access Centre (CCAC) merged into the Central Local Health Integration Network (LHIN) as of June, 2017, as part of the Patients First program of the Province of Ontario.

Your primary care physician can help you decide when it’s the right time to access the LHIN Palliative care Team.

Often there is a trigger event that signals a change – pain, depression, climbing the stairs is no longer possible, more help needed with activities of daily living, etc.

Your parent’s family Doctor, may not be available to care for them in the community and they may not know about many of the palliative care services and supports available in the community or how to access them. They may refer your parent back to the specialist they are seeing (such as an Oncologist etc.).

You can call the Central CCAC yourself, at 1-888-470-2222, ext 5562 (or press option 1 and then 4 to speak to a member of the Central CCAC team at any time).

To research palliative care and services available visit www.centralhealthline.ca

An experienced private home health care service like Eldercare Home Health, can also act on your behalf to assist you in connecting with a CCAC Palliative Care Team.

For urgent palliative care issues:

For urgent palliative care issues associated with end of life support call the 24/7 Palliative Care Crisis Line.

Call: 1 844-437-3463.

Call the number above when you need help with:

Emotional or physical changes

Worsening or changing physical pain

Medical equipment or supply concerns

LHIN/CCAC brochure

This service connects patients and families to a Registered Nurse for urgent issues relating to pain and symptom management and physical and emotional wellbeing. The Nurse can also help address question about medical equipment. You do not need to be receiving care through the CCAC to access this service.*

9 Why your parent may need additional private palliative care even if they are in a hospital or Long Term Care facility

Although palliative units in hospitals are generally well staffed, there are benefits to arranging supplemental care for your parent through a reputable and experienced home health care provider.

These same benefits apply to arranging supplemental care for your parent in a Long Term Care facility, which, as mentioned earlier are not highly resourced or focussed on providing palliative care.

Caregivers can be hired to be with your parent around the clock, so they are never alone.

Caregivers can help with providing comfort measures – liquids and ice chips to help with hydration (as appropriate), applying hand and lip moisturizer on a regular basis, and can provide assistance with toileting and personal hygiene.

Caregivers can also provide companionship and cognitive stimulation, and communicate with facility staff on behalf of your parent.

Caregivers can also alert their managers at the home health care company to any concerns they have about the care being provided by the facility so that management can inform family and advocate on your parent’s behalf.

Caregivers can alert managers of a change in your parent’s condition so that you and your family can be alerted in as timely a manner as possible.

Eldercare Home Home health has been providing palliative care in our client’s homes, retirement homes, hospitals and Long Term Care facilities since 1995. If you’re looking for palliative care for your elderly parent, we can help.

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10 Personal Matters

Fear

It is normal for someone who is palliative to be afraid. Below are some of the fears that your parent may be experiencing and suggestions on how to address them

Fear of pain and suffering – pain can usually be managed very effectively with medication and the use of relaxation techniques such as massage, music and pet therapy, breathing exercises etc. Make sure your parent’s medical team understands your parent’s wishes with respect the use of medication for pain relief and that they follow through.

Fear of being a burden on the rest of the family – communication is key. Advance planning can help alleviate your parent’s fear of becoming a burden by identifying options and next steps so that the path is clear should their care needs become more complex.

Fear that family may not want them to die at home – unless there are other family members living in your parent’s home or some other extenuating circumstance, your parent’s wishes and those of their spouse should be respected.

Fear of the unknown – if your parent is religious or has spiritual beliefs it may be possible to have a rabbi, priest or other representative spend time with them. Accessing a psychologist, psychotherapist, or psychiatrist may also be helpful.

Fear of loved ones seeing them fade away – here too if your parent is religious or has spiritual beliefs they may benefit from visits from a rabbi, priest or other representative. Accessing a psychologist, psychotherapist, or psychiatrist may be helpful as well.

Fear of losing control – involving your parent in the care process, to the extent that they are able, can help reassure them that they are in control.

Fear of dying alone – if it’s possible set up a schedule so that a family member can be with our parent around the clock. Having professional caregivers by the bedside may also be an important part of the care plan to fill gaps when family members are not able to be there.

11 Legal Matters – the documents your parent needs to put in place now

While the primary purpose of this guide is to help you understand and deal with the health care related aspects of palliative care, there are legal and financial details that need to be considered as well.

It’s important that your parent has a Power of Attorney for Personal Care and a Power of Attorney for Property, so that if they are unable to make decisions or provide direction at some point, the individual(s) assigned Power of Attorney can step in.

Family will sometimes make decisions based on their own feelings and disregard a parent’s wishes. They may, for example choose to provide oxygen, subcutaneous fluids or agree to the insertion of a feeding tube.

This is why a Power of Attorney for Personal Care is so important. The person who has been identified in this document has the power and responsibility to act in a way that is consistent with your parent’s wishes, and if necessary disregard the opinions of other family members.

Remember, your parent has entrusted this person (or these persons) to act in a way that is consistent with what they would want, which may not be what you would want. It is a significant responsibility and the answers are not always clear. You need to respect the POA’s decisions as you would your parent’s.

If your parent does not yet have a Power of Attorney for Personal care and a Power of Attorney for Property it is important they be prepared ASAP – while they are competent.

Ministry of the Attorney General, Ontario – Power Of Attorney (POA) for Personal Care and Power of Attorney for Property This website Includes an overview of both types of Power of Attorney and a link to a free “create a power of attorney yourself” kit. It also includes information on advance directives – a document that tells others what you want to happen if you need medical care etc. https://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/incapacity/poa.php

Expected Death In The Home (EDITH) – guidelines and forms. The Expected Death in the Home Protocol (EDITH) supports end of life care in the home and an individual’s expressed wishes for no resuscitation when their heart stops beating or they stop breathing. The EDITH Protocol supports the development of an end of life plan to identify the plan for pronouncement/certification of death in the home to allow for the timely removal of the body to the funeral home. This reduces the stress for the family when death occurs and supports physicians to care for end of life patients in the community setting. http://s245089275.onlinehome.us/images/GL-HPC-04%20EDITH%20Protocol%20Guidelines%20Oct%203%202013.3926cd70.pdf

Having these important forms completed and available will help reduce everyone’s stress.

12 What physically happens when a person dies?

Knowing what happens as someone gets closer to death, and dies, can help ease the fear you or family members may have.

Common experiences near the end of life include: shortness of breath, depression, anxiety, tiredness or sleepiness, mental confusion and reduced alertness, as well as refusing to eat and drink.

Your parent’s hands and feet, and arms and legs may be cool to the touch and may even become darker or bluish coloured.

Their breathing and heart rate may slow. Their breathing may become abnormal or they may make a gurgling sound when breathing. Eventually you will notice that their chest stops moving and that no air is coming out of their nose. Your parent will not have a pulse and if their eyes are open, they may seem glassy.

After your parent has died, they may shudder or their arms or legs may move. They may even sound like they are crying out – this is because of muscle movement in the voice box.

Your parent may release urine or stool, but if this happens, it will likely be only a small amount since they will probably not have had much to eat or drink in the last few days.

Rigor mortis (stiffening of the body after death) will set in about one hour or so after death.

Even though a person’s death may be expected, none of us know how we will react until it actually happens. It’s natural to be upset, and we all handle being upset differently. You may find that you or other family members are fine at the time, but later become more emotional. This is normal and no one should feel that they have to “keep it together”.

Be there for each other, and if you are on your own take comfort in knowing that you care and that is why you feel the way you do.

13 Medical Assistance in Dying

On June 17, 2016 the federal government passed Bill C – 14. This Bill outlines the requirement that a person must meet in order to be eligible to receive medical assistance in dying. It also attempts to establish safeguards that a Doctor or Nurse Practitioner must follow to legally provide medical assistance in dying.

In summary, an individual now has the right to seek assistance from a Doctor or Nurse Practitioner to end their own life.

There are a number of conditions including:

The request must be in writing and no one can make this request on the individual’s behalf – even their “substitute decision maker” cannot make this request on their behalf.

The individual must be at least 18 years old

The person must be able to provide consent until the moment that they receive medical assistance in dying – there is no opportunity to give consent in advance.

The person’s Doctor or Nurse Practitioner will assess whether they are eligible to receive medical assistance in dying.

The person has a grevious and incurable illness, disease or disability. You must be in an advanced state of irreversible decline in capability and be enduring physical or psychological suffering.

Natural death must be reasonably foreseeable

There is an entire process including a waiting period of at least 10 days before assistance in dying can be provided. Individual Doctors and/or Nurse Practitioners may refuse to provide assistance.

For more detailed information see the links to resources section of this document.

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14 Definitions

Power of Attorney for Personal Care

Your Power of Attorney for Personal Care is the person you name can make decisions about your health care, housing and other aspects of your personal life (such as meals and clothing) if you become mentally incapable of making these decisions.

Do Not Resuscitate (DNR):

A Do Not Resuscitate form (DNR) is an official document provided by the Ministry of Health and Long Term care. It must include a serial number or it is invalid and must be kept on site. It must be signed by a “Valid health care provider” – an MD, RN, RPN. For more information on the DNR see this excellent communication on DNR by The London Health Sciences Centre or Southwest Ontario. The DNR form is NOT for use in hospital. Within hospitals there are different levels of care that may be chosen.

Expected Death In The Home (EDITH)

The EDITH Protocol supports the development of an end of life plan to identify the plan for pronouncement/certification of death in the home to allow for the timely removal of the body to the funeral home. When there is a physician involved in care who supports the nurse pronouncing the death, the physician agrees to visit the funeral home within 24 hours of the death to sign the death certificate.

This reduces the stress for the family when death occurs and supports physicians to care for end of life patients in the community setting.

This protocol is intended to help reduce the inappropriate use of Emergency Services such as Police, EMS, Fire and The Coroner. The process for completing the Expected Death In The Home form involves:

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* Initial Assessments are conducted by a Registered Nurse. Case management my be provided by a Registered Nurse Case Manager or Registered Practical Nurse Case Manager. Caregivers are PSWs, have similar qualifications or are internationally educated Nurses.